The recent discussions about autism have been fascinating, partly because there is a robust neurodiversity community who have very deep, personal, and thoughtful opinions about the whole thing. One of the issues that has come up after we discussed this on the SGU was that of self-diagnosis. Some people in the community are essentially self-diagnosed as being on the autism spectrum. Cara and I both reflexively said this was not a good thing, and then moved on. But some in the community who are self-diagnosed took exception to our dismissiveness. I didn’t even realize this was a point of contention.

Two issues came up, the reasons they feel they need self-diagnosis, and the accuracy of self diagnosis. The main reason given to support self-diagnoses was the lack of adequate professional services available. It can be difficult to find a qualified practitioner. It can take a long time to get an appointment. Insurance does not cover “mental health” services very well, and so often getting a professional diagnosis would simply be too expensive for many to afford. So self-diagnosis is their only practical option.

I get this, and I have been complaining about the lack of mental health services for a long time. The solution here is to increase the services available and insurance coverage, not to rely on self-diagnosis. But this will not happen overnight, and may not happen anytime soon, so they have a point. But this doesn’t change the unavoidable reality that diagnoses based upon neurological and psychological signs and symptoms are extremely difficult, and self-diagnosis in any medical area is also fraught with challenges. Let me start by discussing the issues with self-diagnosis generally (not specifically with autism).

I wrote recently about the phenomenon of diagnosis itself. (I do recommend you read that article first, if you haven’t already.) A medical/psychological diagnosis is a complex multifaceted phenomenon. It exists in a specific context and for a specific purpose. Diagnoses can be purely descriptive, based on clinical signs and symptoms, or based on various kinds of biological markers – blood tests, anatomical scans, biopsy findings, functional tests, or genetics. Also, clinical entities are often not discrete, but are fuzzy around the edges, manifest differently in different populations and individuals, and overlap with other diagnoses. Some diagnoses are just placeholders for things we don’t understand. There are also generic categorization issues, like lumping vs splitting (do we use big umbrella diagnoses or split every small difference up into its own diagnosis?).

Ideally, a diagnostic label predicts something. It informs prognosis, or helps us manage the patient or client, for example by determining which treatments they are likely to respond to. Diagnostic labels are also used for researchers to communicate with each other. They are also used as regulatory categories (for example, a drug can only have an FDA indication to treat a specific disease). Diagnostic labels are also used for public health communication. Sometimes a diagnostic label can serve all of these purposes well at once, but often they are at cross-purposes.

Given this complexity, it takes a lot of topic expertise to know how to apply diagnostic criteria. This is especially true in neurology and psychology where signs and symptoms can be difficult to parse, and there are many potential lines of cause and effect. For example, someone can have primary anxiety and their anxiety then causes or exacerbates physical symptoms. Or, someone can have physical symptoms that then cause or exacerbate their anxiety. Or both can be true at the same time, and the conditions are “comorbid”.

One main problem with self-diagnosis is that a complex diagnosis requires objectivity, and by definition it is difficult to be objective about yourself. Fear, anxiety, and neuroticism make it even more difficult. As a clinician I see all the time the end-results of self-diagnosis. They are usually a manifestation of the patient’s limited knowledge and their fears and concerns. We see this commonly in medical students, for example. It is a running joke in medical education that students will self-diagnose with many of the conditions that they are studying. We discuss this with them, and why this is happening.

This is partly the Forer Effect – the tendency to see ourselves in any description. This is mostly confirmation bias – we cherry-pick the parts that seem to fit us, and we unconsciously search our vast database of life experience to search for matches to the target symptoms. Yes, I do occasionally cough. My back does hurt at times. Now imagine this process with cognitive symptoms – I do get overwhelmed at times. I can focus on small details and get distracted, etc. With the Forer Effect (the most common example of this is people seeing themselves in any astrological personality profile), the more vague or non-specific the description, the stronger the effect. This makes psychological diagnoses more susceptible.

To make an accurate diagnosis one also needs to understand the different between specific and non-specific symptoms. A fever is a symptom of an acute or subacute Lyme infection, but it is an extremely non-specific one as fevers can result from hundreds of causes. A targeted rash is a specific sign (so specific it is called pathognomonic, meaning if you have the sign you have the disease). (BTW – a symptom is something you experience, a sign is something someone else sees.) So, having a list of symptoms that are consistent with a diagnosis, but all non-specific, is actually not that predictive. But the natural tendency is to think that it is – “I have all the symptoms of this disease” is a common refrain I hear from the wrongly self-diagnosed.

Also, it is important to determine if any symptoms can have another cause. If someone is depressed, for example, because a loved-one just died, that depression is reactive and healthy, not a symptom of a disorder.

Further, many signs and symptoms are a matter of degree. All muscles twitch, for example, and a certain amount of twitching is considered to be physiological (and normal). At some point twitching becomes pathological. Even then it may be benign or a sign of a serious underlying neurological condition. But if you go on the internet and look up muscle twitching, you are likely to self-diagnose with a horrible condition.

An experienced clinician can put all of this into perspective, and make a formal diagnosis that actually has some predictive value and can be used to make clinical decisions. Self-diagnosis, however, is hit or miss. Mainly I see false-positives, people who think they have a diagnosis based on anxiety or non-specific symptoms. These tend to cluster around diagnoses that are popular or faddish. The internet is now a major driver of incorrect self-diagnosis. Some people, or their families, do correctly self-diagnose. Some neurological conditions, like Parkinson’s disease, for example, tend to have fairly easily detected and specific signs and symptoms that a non-expert can recognize. Even with PD, however, there are subtypes of PD and there are some secondary causes and comorbidities, so you still need a formal expert diagnosis.

With autism spectrum disorder, I do not doubt that some people can correctly determine that they are on the spectrum. But I would not rely on self-diagnosis or think that it is automatically accurate (because people know themselves). The diagnosis still benefits from formal testing, using formal criteria and cutoffs, ruling out other conditions and  comorbidities, and putting it all into perspective. I also am concerned that self-diagnosis can lead to self-treatment, which has a separate list of concerns worthy of its own article. Further, the internet makes it easy to create communities of people who are self-diagnosed and seeking self-treatment, or getting hooked up with dubious practitioners more than willing to sell them snake oil. I am not specifically talking about autism here, although this does exist (largely attached to the anti-vaccine and alternative medicine cultures).

There is now, for example, a chronic Lyme community who help each other self diagnosis and get treated by “Lyme literate” practitioners. This community and diagnosis are now separate from scientific reality, existing in their own bubble, one which foments distrust of institutions and seeks out “mavericks” brave enough to go against the system. It’s all very toxic and counterproductive. This is what concerns me the most about an internet fueled community of the self-diagnosed – that it will drift off into its own world, and become the target of charlatans and snake oil peddlers. The institutions we have and the people who fill them are not perfect – but they exist for a reason, and they do have standards. I would not casually toss them aside.